The irrelevance of the Netherlands Cancer Registry NCR in monitoring the National Comprehensive Canc

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The (ir)relevance of the Netherlands Cancer
Registry (NCR) in monitoring the National
Comprehensive Cancer Control Program (NCCP)

• Renée Otter
• Marjan Gort
• Sabine Siesling

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• NCR NCCP

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NCR

• Since 1989 on national level
• Minimal data
• Personal identification
• Demographic
• Tumour
• Topography
• Morphology
• Incidence date
• Basis of diagnosis
• Additional data

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NCR
Regional level

• Stage TNM, Ann Arbor
• Location of diagnosis
• Professional under code
• Referral
• BUT
• Minimal FU
• Since recently linkage with national databank of
  death(automated since 1994) Survival analysis on
  national level

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NCCP
2005-2010
1989-2000
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Domains of NCCP 2005-2010
primary prevention
secondary prevention
Care medical, supportive, palliative
Professional experiences, knowledge, skills

Organization, structure, process

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Domains of NCCP 2005-2010
primary prevention
secundary prevention
Care medical, supportive, palliative
Professional experiences,knowledge, skills

Organisation, structure, process

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Elements of a quality system for care
research
professionals
organization
audit
Clients/patients
education
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products Input, Structure, Process and outcome
indicatoren
Plan
Act
Check
Do
Quality system an obligation for control and
improvement
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Levels of indicators
EUROPEAN/INTERNATIONAL
NCCP
NATIONAL
MACRO
MESO
REGIONAL
HOSPITAL/INSTITUTE
MICRO
MDT
One discipline
Professional
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Levels of indicators
EUROPEAN/INTERNATIONAL
NATIONAL
MACRO
NCCP
MESO
REGIONAL
HOSPITAL/INSTITUTE
MICRO
MDT
One discipline
Professional
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Levels of indicators
EUROPEAN/INTERNATIONAL
NATIONAL
MACRO
NCCP
MESO
REGIONAL
NCR
HOSPITAL/INSTITUTE
MICRO
MDT
One discipline
Professional
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• NCCP
• Primary prevention
• Smoking, obesity
• Secondary prevention
• Logistics between breast cancer screening and
  capacity of D T
• Introduction of colonic screening
• Care
• Quality criteria for
• Structure, process, medical outcome, pat.
  experiences

• NCR
• Long term incidence
• Waiting times, per hospital
• Evaluation of sensitivity, specificity
• Incidence, stage, hospital
• Waiting and throughput time,
• 5yrs overall survival
• trends in incidence/stage, survival
• Audit of onc care (CCCs)

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Percentage of screen-detected breast cancer
patients operated within 28 days after 1st visit
in outpat.clinic in one province 1994-2002
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• NCCP
• Psychosocial support
• Screening instrument
• Rehabilitation program
• Training and education of professionals
• Research

• NCR
• None in NCR, but patients experiences
  questionnaire
• None in NCR
• For some domains NCR can be of some help

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In conclusion (1)

• For monitoring secondary prevention and care
  within a NCCP a national population- based cancer
  registration is the most appropriate tool
• BUT
• To achieve the aims within these domains, quality
  improvement instruments are necessary

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In conclusion (2)

• Therefore cancer networks (including bench marks,
  consultancy services, audits ) and cancer
  registries (research) should maximally
  collaborate (or being in the same organization)
  in order to guarantee continuous implementation
  of innovation and improvement of quality
• Monitoring is not enough to achieve goals!

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In conclusion(3)

• Some domains of the NCCP need other databanks
  (professional training and education requests)
• Some domains like research are in continuous
  movement , need therefore another approach like a
  5 years priority plan.

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Additionally

• The NCR should be THE instrument to provide
  information on trends, future scenarios on
  incidence and prevalence necessary for policy
  makers to identify
• Capacity of professionals, beds etc
• Increase in costs
• To prepare the next period of the NCCP after 2010
• For patients
• The relevance of patients associations

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• Quantity is the enemy
• of quality
• Calum Muir (1984)

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